Saturday, January 14, 2017

Diagnosis Dystonia

Diagnosis Dystonia: Diagnosis Dystonia is a patient authored resource for dystonia patients, loved ones, and caregivers.

Video of my Second Round of Botox Injections

This video was taken on January 12, 2017. The injections are sometimes painful but the whole procedure takes less than 15 minutes for me. The sound you hear is the EMG machine. If the needle were injected into a healthy muscle there would be no sound. The louder the sound of static is, the more dystonic muscle activity is occurring. This is what helps the doctor decide where to inject the Botox.

Psychologically it is a very scary thing for me because of a horrifying experience that I had a few years ago with Botox where I was barely able to walk or feed myself for a few months. The Botox can either provide great pain relief, no relief or make your symptoms much worse. The only way to know is to try and wait. It's a gamble. My anxiety has been high the past week and I have had difficulty falling asleep. My mind is racing with "what if" scenarios.

The feeling of having Botox is so bizarre. I’m thankful that so far I am not experiencing any significant pain, it’s just the feeling of a heavy weight that won’t move in certain situations. Mostly bending over and eating are where I am noticing difficulty. It feels like if you would try to balance a heavy book on your head and walk but your head is the book. (If that makes sense?) Looking to the left is still difficult and feels very strange and out of control. 

I am still feeling very tired physically. I do my eye exercises daily as well as yoga. I got back on my stationary bike yesterday for the first time but my energy has been very low. I spent a lot of time sitting and reading or watching TV. Those are two things that I was not able to do for almost two years without a struggle or pain-so I am thankful for that gift. 

The Injection Process

Botulinum toxin injections are administered by trained medical professionals (usually a doctor, physiotherapist or dystonia nurse) and most commonly delivered at a local hospital. Some people find the injection hurts a little but others are not concerned about it at all. Depending on the location of the muscle spasm, doctors will either select the muscles by observing the abnormal postures or movements and feeling for the muscle spasm or will use an EMG (electromyography) machine which measures muscle activity.

The number of injections will vary depending on the severity of your dystonia. Talk to your doctor about the number of injections you will need.

After the injection, the treatment takes effect gradually over 4–7 days, sometimes longer. Where it is a suitable treatment, botulinum toxin provides significant relief for the majority of people but it is not perfect - usually mitigating symptoms rather than completely eliminating them. The positive effects of botulinum toxin injections can last up to 16 weeks, sometimes longer; although many people find that the injections need repeating before this and usually attend a clinic around every 12 weeks.

Friday, January 6, 2017

Dystonia and Genetics

I have been very concerned about the possibility of my dystonia being inherited. I am estranged from my mother and I have no way of knowing if anyone on her side of the family had any form of dystonia. The last few times I saw her she was blinking excessively which may or may not be a sign. 

I am not concerned for myself, but for my two sons and I pray that this is not passed on to anyone else in my family.

Here is a copy of the Dystonia and Genetics pamphlet from the Dystonia Society Website.


Tuesday, January 3, 2017

Dystonia Alex's Sory

There are very few options for the treatment of dystonia. 

Deep Brain Stimulation is one of them. In this case and many others it has given sufferers of dystonia a large portion of their lives back. This surgery is something that I have been considering if the current treatment path I am on does not continue to improve. I have hope that functional neurology combined with the BOTOX will work, but I also want to explore other possibilities so that I am prepared if it does not work for me. I wanted to share these videos so that anyone considering DBS can see what the surgery looks like. So happy for Alex and her successful treatment.